Lessons and love from Alzheimer's World

Lesson #33: Crisis? What Crisis?

I’m not good in a crisis. In my dreams, I’m this incredibly courageous woman who leaps tall buildings, laughing and bubbling with confidence. In my fantasies, I am an orator of note; able to express myself elegantly with witty wisdoms that make everyone shake their head in awe and agreement. In reality, I’m neither. I crumble with anxiety at the merest whiff of uncertainty, I cringe before the specter of responsibility, and I become tongue-tied and dumb with despair when confronted with a conundrum.

And yet, as all caregivers know, crisis is just part of a caregiver’s day. Even if it’s just a minor crisis — like Dad grabbing the sharpest knife in the kitchen to hack open his wine box and cutting his hand and everyone running around because he’s on blood thinners and can’t sustain a deep bleed — there is the constant anticipation of these moments, which can either liven up a dull day or just add to a mountain of worry that feels crushing at dawn.

The major crises are harder to deal with and more heartbreaking — a senior who has gone missing, a fall resulting in irreperable damage, physical or verbal abuse, a disabling stroke or lung infection — and yet, they, too, are all routinely experienced by our seniors and their care partners.

I looked up the word crisis.Word-nerd that I am, I wanted to make sure I was not appropriating inappropriately. I was surprised to see that this word is tailor-made for caregiving and for living in Alzheimer’s World:

You tell me – does this describe a crisis, a caregiving journey, or the state of dementia and caregiving in North America?

an emotionally significant event or radical change of status in a person’s life

a paroxysmal attack of pain, distress, or disordered function

the turning point for better or worse in an acute disease

an unstable or crucial time or state of affairs in which a decisive change is impending; especially one with the distinct possibility of a highly undesirable outcome

a situation that has reached a critical phase

Is caregiving in crisis? I would say so, on behalf of the millions of hardworking caregivers who are overworked and underpaid – or the family caregivers like me who are unpaid and emotionally drained – because our economy values profits over people, consumerism over compassion. And on behalf of society in general, which is still ignoring the pandemic of mental illness that enshrouds us. The next two decades (that’s as far as I dare look ahead) will be very interesting ones.

Recently, I had to deal with a scheduling crisis. Six days into the job, our new caregiver was called away on a family emergency (tragic, my heart is still aching for her), and all of a sudden I was scrambling to find fill-ins at the worst possible moment, with my usual helpers unavailable for unassailable reasons. I was filling in myself while coping with the despair of overload, a voice inside saying “Enough!” – I felt my dread mounting, my desire to flee like some evil gnome in my ear, my self-pity ramping up for a big party without alcohol.

When you feel you have no support, it’s so easy to give up. I pushed through, making calls to everyone I knew, weeping with frustration and punching pillows at home, cursing into thin air and taking deep breaths. At one point, I had a flash of desperate insight – “This is why people end up in residences!” When it was all over, with two of my “angels” coming through for me and releasing me from my personally-branded emotional crisis, I took a step back and wondered what all the fuss had been about. The shit storm had passed, so to speak. Things were back to abnormal.

I’m not good in a crisis. But I want to be! And perhaps that’s what keeps me going on this caregiving journey. I will never give up trying, I will never give up learning, I will never give up believing that there is always a solution that will meet all needs, that will make everyone happy, that will make the world a better place. Call me stubborn, call me idealistic, call me insane – this is who I am. Thanks in no small part to the parents I am now caring for, I have an unshakable faith that we can create the world we yearn for, if only we keep trying. The simplest ingredient in any success story, and the one we forget so quickly in a crisis: Persistence.

I am amazed that you are still doing this dear sister….you truly are an angel and I thank you from the bottom of my heart for all that you do for our parents. I wish I had your stamina and strength. YOU are my hero! Today and always.